Even though many children with celiac disease can ease symptoms by going on a gluten-free diet, kids should still get blood tests and other exams to confirm whether they actually have the disease, some doctors argue.

The testing recommendations, published in the journal Pediatrics, mirror guidelines for diagnosing the disorder in adults. Because children may have a harder time eliminating gluten from their diets, they may also require long-term follow-up to support good nutrition habits and check for complications that can develop when the disease isn’t well managed.

To effectively treat children with the disease, doctors and parents need to be sensitive to the unique problems young patients may face, such as difficulty understanding what’s in their food and drink, peer pressure to eat and drink what their friends do, and a fear of ridicule and being singled out, said study co-author Dr. J. Decker Butzner of the University of Calgary in Canada.

“One main take away is that children can learn to manage their diet,” Butzner said by email. “They need to be involved in grocery shopping, menu planning, restaurant assessment, food ordering and trip organization in regards to a gluten free diet.”

“Second, children need to be periodically assessed by a health care professional for the management of their celiac disease,” Butzner added.

About one in 100 people have celiac disease, an autoimmune disorder that damages the small intestine and interferes with the absorption of nutrients from food. People with celiac disease can't tolerate gluten, a protein in wheat, rye and barley. Left untreated, the condition can lead to complications such as malnutrition, low bone density, lactose intolerance and infertility.

To craft the diagnosis and treatment recommendations laid out in the current paper, Butzner and colleagues reviewed previously published research on celiac disease. Then, they anonymously voted on proposed guidelines.

In addition to age-appropriate education about how to follow a gluten-free diet, children with celiac disease also need close monitoring to make sure their growth in height and weight is appropriate for their age, the doctors argue. They should also be checked for nutritional deficiencies that could hamper growth, such as an insufficient amount of iron in their diet.

Sometimes, children with celiac disease also have type 1 diabetes, another chronic autoimmune condition that results in the pancreas producing little or no insulin, a hormone needed to allow blood sugar, or glucose, to enter cells and produce energy.

People with type 1 diabetes typically have to test their own blood sugar levels throughout the day and inject insulin to manage them. Getting the insulin dose right requires patients to count carbs correctly, and kids with celiac disease need to do this in addition to juggling a gluten-free diet.

At the same time, children need to be monitored for proper bone health because celiac disease can lead to osteoporosis, a thinning of the bones that can lead to fractures and is more typically seen in old age.

Doctors also need to monitor kids’ heart health because celiac disease is associated with an increased risk for clots, which have the potential to contribute to strokes and other life-threatening problems.

Down the line, these children are also at an increased risk for liver damage, particularly if their gluten-free diet isn’t well managed. For this, too, doctors need to watch closely for early warning signs and keep tabs on how children are eating to minimize the odds of complications.

Parents and children need to understand as well that celiac disease isn’t a one-size-fits-all diagnosis, said Dr. Tracy Ediger, a researcher at Ohio State University and Nationwide Children’s Hospital in Columbus who wrote an editorial accompanying the study.

“Celiac disease presentations are highly variable and should be at least considered with many different symptoms, including abdominal pain, failure to thrive/weight loss and diarrhea, constipation, anemia, canker sores, arthritis, tooth enamel defects, distinct rashes, behavioral issues, headaches, delayed puberty and infertility,” Ediger told Reuters Health by email.

“Close follow-up with the primary care provider and pediatric gastroenterologist are also important to monitor growth parameters, symptoms and blood work to assure normalization,” Ediger added.

Source: Reuters